Gabe is back this week to blog about stress, the impact it has on CRPS/RSD and chronic pain, and how to try to manage it. While stress is an inevitable part of life, there are certainly ways to manage it.
“…Chaos calls but all you really need…Is to just breathe.” -Johnny Diaz, “Breathe”
Stress is a normal part of everyday life. It starts as soon as you wake up: getting kids ready for school, finishing a major project for work, or preparing for a big family meal. These are normal, mostly every day, stresses of life. Often times, for the typical human being, it can be hard not to allow these stresses to get the best of you.
Now, add chronic pain into the scenario.
Stress is one of the most vicious attackers a chronic pain warrior can face. If we allow it, it can easily wrap its nasty claws around our neck and choke the energy right out of us, vital energy we use to ward off our pain. This permits our pain to surge out of control and leaves many of us bedridden for weeks on end.
How do you combat this?
Stress is defined as this,
“Stress is often described as a feeling of being overwhelmed, worried or run-down. Stress can affect people of all ages, genders and circumstances and can lead to both physical and psychological health issues. By definition, stress is any uncomfortable “emotional experience accompanied by predictable biochemical, physiological and behavioral changes.” Some stress can be beneficial at times, producing a boost that provides the drive and energy to help people get through situations like exams or work deadlines. However, an extreme amount of stress can have health consequences and adversely affect the immune, cardiovascular, neuroendocrine and central nervous systems.”
That is why, in most cases, stress can be one of the many variables that causes us to have chronic pain.
In article written by Susanne Babbel Ph.D., M.F.T., she states:
“…Experts have noticed that experiencing a traumatic event can have an impact on the development of pain. In fact, approximately 15-30% of patients with chronic pain also have PTSD…During a traumatic event, the nervous system goes into survival mode (the sympathetic nervous system) and sometimes has difficulty reverting back into its normal, relaxed mode again (the parasympathetic nervous system). If the nervous system stays in survival mode, stress hormones such as cortisol are constantly released, causing an increase in blood pressure and blood sugar, which can in turn reduce the immune system’s ability to heal. Physical symptoms start to manifest when the body is in constant distress…”
The definition of a traumatic event is: “A is an incident that causes physical, emotional, spiritual, or psychological harm. The person experiencing the distressing event may feel threatened, anxious, or frightened as a result.” (Source)
This can be either living through a tornado or even as simple as pushing yourself extremely too far past your physical limits.
Information is great and all, but that still does not tell us how to combat stress.
Well, Valerie Bertinelli puts it best.
“…There’s going to be stress in life, but it’s your choice whether you let it affect you or not.”
Stress is normal. The catch is whether or not you will let yourself believe it. It is not going to be easy. Nothing ever is in life.
All it takes is one step in the right direction.
Down below, I am going to leave links to several sites that I have found to be quite helpful with showing techniques of how to cope with stress. I hope they are of great use to you as your journey continues.
Written By Michael Sullivan, PT, MSPT for RSDSA blog.
This post is about understanding CRPS was originally featured on “Fitness for Your Health.” Learn about the pain and how they diagnosis it here.
This week’s topic is one not many know too much about but it can be a very debilitating condition. Those who suffer from Complex Regional Pain Syndrome (CRPS), A.K.A. Reflex Sympathetic Dystrophy (RSD), know far too well how bad this condition is. It is a very complex condition (hence the name), so we have asked the Director of Physical Therapy here at our clinic to explain it.
Michael Sullivan earned his MSPT at Duke University in 1989. He worked in private practice for eight years before deciding to move to help those suffering from chronic pain in a multidisciplinary setting. He joined BAPWC in 2011 and continued to spread his knowledge. He went so far to train a Labradoodle named Seamus to become the clinic’s therapy dog! While his head is like a library of physical therapy, a benefit the clinic staff have all been privy to is his ability to BBQ. The man can cook over an open flame!
Those suffering from CRPS/RSD and those who have never heard of the condition can benefit from this post. CRPS is one of those diseases that sometimes cannot be seen, but those suffering from it can neverignore it. If you have questions or comments, please fill out the form at the end of the post and we will get back to you within 24 hours!
De-mystifing the diagnosing of Complex Regional Pain Syndromes (CRPS)
If you or someone you know has been diagnosed with CRPS and you are better trying to understand what that means, whatever you do, do not search the internet for images of CRPS. Now that I told you not to do that, you are curious and you are thinking, ‘maybe I’ll have just a quick look’. DON’T DO IT! There is way too much of the ‘Worst ______________ Ever!’ phenomena going on out there. Go ahead and fill in the blank with just about anything and do an internet search. Plug in ‘sunburn’ or ‘mosquito bite’. It is enough to have you afraid to go outside in a December blizzard in Chicago without slathering on SPF 120 sunscreen and pure DEET.
Over and over we meet and evaluate people who are looking to better understand this diagnosis and what to do about it. I would like to share with you today information about how the diagnosis is made. By the time many patients get to us they have often been through a myriad of tests and a handful of specialists. Some are misdiagnosed, while others are told that there is nothing wrong with them and that ‘it’s all in your head.’ And while technically, there is a great deal going on with the brain in CRPS, this is not always the intent of the message that is being delivered. CRPS is not a psychological disease, but it is a disease that creates changes in our central and peripheral nervous system, including our brain.
Why is there so much confusion around this diagnosis? One reason is that there is no one test that can be run as definitive proof of the presence or absence of a complex regional pain syndrome. I have seen a CRPS claim denied because the insurance adjuster thought that an unremarkable MRI was proof that nothing was wrong with the patient. Another reason is that the criteria for accurate diagnosis has changed as recently as 2003, with the model being validated in 2010. There is a lot of confusion out there amongst the medical community and the insurance industry that can lead to unfortunate outcomes as improper diagnosis leads to an incorrect treatment plan and often times long delays in receiving appropriate care. Lastly, there is still a lot that we don’t know about the pathophysiology or underlying cause of CRPS.
The gold standard right now for diagnosing CRPS came from a meeting of experts in Budapest in 2003 and is called the Budapest Criteria. Further study attests to the accuracy of using these criteria and this is what your health care professional should be referencing to diagnose CRPS. The diagnosis requires some good old fashioned evaluation skills; talking to our patients to understand their symptoms and evaluating them for the appropriate diagnostic signs. An excerpt from Harden et al. (1) puts forward the following criteria for diagnosing CRPS:
Continuing pain, which is disproportionate to any inciting event
Must report at least one symptom in three of the four following categories:
Sensory: reports of hyperesthesia and/or allodynia
Vasomotor: reports of temperature asymmetry and/or skin color asymmetry
Sudomotor/edema: reports of edema and/or sweating changes and/or sweating asymmetry
Motor/trophic: reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
Must display at least one sign at time of evaluation in two or more of the following categories:
Sensory: evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement)
Vasomotor: evidence of temperature asymmetry and/or skin color changes and/or asymmetry
Sudomotor/edema: evidence of edema and/or sweating changes and/or sweating asymmetry
Motor/trophic: evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
There is no other diagnosis that better explains the signs and symptoms
Let’s take a closer look at each of these criteria to better understand them.
Continuing pain, which is disproportionate to any inciting event.
Often times a very minor injury can result in severe signs and symptoms. The belief that there has to be a significant injury to result in CRPS is not accurate. I’ve seen minor ankle sprains, small contusions, and small puncture wounds trigger a complex regional pain syndrome that is just as involved as a person who was run over by a forklift. Immobilization following an injury can be the precipitating factor. Immobilization of even a healthy limb can result in CRPS. Unfortunately, this can provoke skepticism in those not skilled in making this diagnosis, and can lead to delayed care as the nature of the injury is viewed as minor, while the consequences can be quite profound.
What are those consequences you ask?
Must report at least one symptom in three of the four following categories:
Sensory: reports of hyperesthesia and/or allodynia. Hyperesthesia is increased pain with a painful stimulus such that a simple prick with a pin can be a significant pain generator.Allodynia is pain with non-painful stimuli. Some people get tactile allodynia where even light touch can provoke pain; they cannot have a sheet resting on their affected extremity at night or the wind blowing on the affected extremity can be severely painful. In some cases near contact or imagining contact can trigger a pain response. Others may get temperature allodynia where they cannot tolerate warm water in the shower. Some do not tolerate movement, or deep pressure. It is important to recognize that not all stimuli that are painful are harmful. By definition, allodynia does not involve any tissue damage, rather sensitization of the nervous system will send information (nociception) to the brain that is processed as pain.
Vasomotor: reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry. Patients will report that the affected extremity is to cold or hot to touch, the extremity can become mildly to severely discolored.
Sudomotor changes/edema: reports of edema and/or sweating changes and/or sweating asymmetry. Hyperhydrosis, or excessive sweating is a common description to the point that people will describe one hand or foot dripping with sweat while the other is completely dry. Edema, swelling in the soft tissue, may come and go without reason.
Motor/trophic: reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin) This is fairly self explanatory in the person’s experience and fairly complex to explain. Motor changes occur due to changes in the brain that are referred to as neuroplastic changes. Our brain is constantly changing in response to all that it processes including sensation, joint position, movement, smells, tastes, sights and sounds. Changes in specific areas of the brain can result in diminished quality of movement affecting our ability to plan movement and execute movement. Trophic changes can include thinning fragile skin, excessive hair growth, ridged nail growth or loss of hair and absence of nail growth.
As you can see, there are a very wide variety of symptoms experienced by the person with CRPS and they can change frequently. This can be baffling to providers not accustomed to treating this disease. These symptoms usually involve one limb and my experience is that most people can draw a line on the affected extremity indicating where their symptoms end or will describe symptoms diminishing as you move up the limb. In approximately 7% of CRPS sufferers symptoms will spread to other body parts.
Must display at least one sign at time of evaluation in two or more of the following categories: This is the same list as above, but now the evaluating clinician has to observe at least one of these findings in two or more of the four categories in order to make a diagnosis. As a frequent caregiver for people with this condition, I can tell you that many of these signs can change rapidly. I could be looking at a normal colored limb, equal in temperature to the contralateral limb with no swelling and then have a stressful conversation with the patient and watch the affected limb change colors, get cold and sweaty. Conversely other CRPS patients have more stable findings: a deep purple limb that is cold and damp to touch, allodynia with light touch that is well defined with swelling and a tremor when attempting to move. If you have one of these limbs, your chances of being diagnosed are likely greater. An evaluator doing a quick one time evaluation at the ‘wrong time’ may not see any of these signs and discount the diagnosis. If symptoms are consistent with diagnosis, but signs are lacking a prolonged evaluation or repeat visit is recommended prior to coming to a conclusion.
Sensory: evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement). Some people will be fine with light pressure, but not with deep pressure or the other way around. Some will have no allodynia or hyperalgesia. Some will begin demonstrating distress if anyone nears their affected limb. We always ask if it is OK to touch before we approach.
Vasomotor: evidence of temperature asymmetry and/or skin color changes and/or asymmetry. We use an infrared thermometer to get hand or foot temperatures without triggering a pain response. Any temperature differential between contralateral limbs greater that 2 degrees Fahrenheit is considered significant.
Sudomotor/edema: evidence of edema and/or sweating changes and/or sweating asymmetry: Lightly touching a palm or the sole of the foot to check for moisture changes is effective. Swelling can be mild or severe and may be intermittent or constant.
Motor/trophic: evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin): assessing active range of motion for joint restrictions also gives information about the quality of the movement. Adding some resistance with strength testing when pressure is tolerated can reveal more motor control problems with exertion. Some people will assume a fixed posture with the affected limb that and won’t tolerate any movement with increased muscle tone present (dystonia). Trophic changes are easy to see when comparing an affected to a non-affected extremity.
There is no other diagnosis that better explains the signs and symptoms: if the presence of known trauma or identified disease can explain the signs and symptoms then a CRPS diagnosis is not indicated.
Our patient experiences indicate that there is a need for increased awareness of CRPS in all facets of care delivery. The lack of a stereotypical presentation is common, but sticking with the Budapest Criteria allows one to consistently make an accurate diagnosis, which is key for delivering effective therapies. This is a very complex topic and my intention is to help educate people on the proper way to diagnose CRPS in a way that is easy to understand. In the process of doing this I have glossed over many other aspects of the disease including pathophysiology, specific neuroplastic changes as a result of the disease, classifications of the disease and the types and rationale for treatment. We can leave those for another time.
To those of you struggling with CRPS, our quality of care and knowledge increases every year thanks to a lot of good people doing research and administering compassionate care based on the science of this disease in particular and chronic pain in general. There is help available. I would like to recommend a couple of resources. I don’t benefit in any way from recommending these resources, but appreciate the work being done.
For those of you who want to dive a little further into the Budapest Criteria previously mentioned see:
Validation of proposed diagnostic criteria (the “Budapest Criteria”) for Complex Regional Pain Syndrome
For those of you who would like to learn more about how acute and chronic pain differ I highly recommend the work of the Neuro Orthopaedic Institute and in particular the book Explain Pain. It speaks to clinicians and patients alike. David Butler and Lorimer Moseley are innovating care for CRPS based upon their findings.
I’m looking forward to reading their follow up to Explain Pain just out.
For a first hand account of a physician who has suffered with chronic pain and discusses how this has specifically influenced his care model while walking you through the maze of treatment options Dr. Peter Abaci’s books ‘Take Charge of Your Chronic Pain’ and ‘Conquer Your Chronic Pain’ are instructive and easy to read. They can be found on Amazon.
Disclaimer: I read Dr. Abaci’s first book in 2011 while looking for like minded professionals to help treat chronic pain. I have been working with him ever since.
For those of you looking for more CRPS specific resources The RSDSA has been on the forefront of CRPS research and advocacy for the past 30 years. They can be found at rsds.org/
Guest blogger Gabe returns this week. After his blog entitled “A Thorn in the Flesh” was well-received, he returns to write about how CRPS pain can change you, but it doesn’t need to be in a negative way.
“Don’t let pain define you, let it refine you.” -Tim Fargo
With chronic pain, it can be very easy to allow it to define who you are. You can feel like just giving up and allow it to control every inch of your life, letting it decide who you can be.
In all honesty, I have found myself doing the exact same thing. Because of how extensive and unpredictable our condition is, we find it extremely difficult to set and attain goals. Every time we set out with good intentions we find ourselves shortly thereafter in so much pain that we feel defeated before we even start. Things that usually help us cope with the pain, after a while, stop working. We are constantly having to adapt to this illness. Sometimes, we just want to throw in the towel, saying, “What does it matter if I plan to do this now? I won’t be able to when the next surge of pain comes along.”
To put this in a matter of perspective, imagine you are a fort being defended by a small garrison of soldiers against a larger, menacing foe. Your enemies have the ability to be invisible until they attack, making your job of defending even more difficult because you do not know from where the attack will come. To make things worse, your enemies are not mindless barbarians, but super-intelligent aliens, so they are very quick learners and will never attack the same way twice and never let up. Because of the relentless onslaught, your soldiers are constantly on the brink of total surrender.
Now, let’s change up a few things in this scenario. What if we replaced our extremely exhausted soldiers with adaptive, super robots that will constantly take the enemy’s attacks, and, with equal strength, push back, seeking new ways to combat and overcome the unrelenting forces.
Wishful thinking, right? What I am trying to say is that one of the key things we need to do is just like Tim Fargo stated, “…not let pain define you, let it refine you.” Some of the greatest people in history were refined through their pain, from Steven Hawking to Helen Keller. If they could overcome their struggles, can we not do the same?
You may not need an army of adaptive, super robots to help you fight your battle with chronic pain, but not allowing it to define you is a good first step toward victory. Choose not to be defined, defeated by this invisible enemy, but choose to be refined daily, facing it head on.
To write about CRPS is to expose a part of yourself that is vulnerable, but so important when it is shared. Members of our community have voiced an interest in writing about CRPS, but didn’t know where to start. Here we go!
Writer’s Block. Anxiety. Fear. Overwhelming thoughts. All of this contributes to an issue that I hear about all to often. Members of the CRPS community want to write about their experiences, both good and bad, but it can be incredibly difficult to find a starting place. How can you get past the barriers to write about your own experience, whether it’s for public viewing or for your eyes only?
Finding a starting point for you writing can be the most difficult part. Brainstorming can help you find the topics that you would really like to write about. Take about one to five minutes and write down every topic that you can think of that pertains to your CRPS. From the day of your diagnosis to meeting your first CRPS friend, write down anything you can think of. Think about your passions in life. Do you like to cook and have had to make adjustments to accommodate your CRPS? Were you a dancer that now choreographs from a chair? Did you find a new hobby because of CRPS? Anything is up for grabs! When time is up, review your list. Circle the topics that you think you could write a detailed piece about. Is there one that sticks out the most? Great! Let’s go from there.
I have always been one that likes to map out my thoughts. I still utilize a tool I was taught in 2nd grade. Take a blank piece of paper. Write your topic in the middle and circle it. Think of at least 3 main points you can write about for this topic and have them web off of the main topic. Then, add your details about each point around it. Then, all you have to do is put it into sentences. I put a sample of my mind map below (yellow is the main topic, blue are the supporting ideas, green are the details for the supporting ideas). Try doing this for a few ideas until you find one that you can’t stop mind mapping. This topic would be something great for you to write about!
With writing about CRPS, more obstacles than Writer’s Block come up. It can be scary to put yourself out there. So many of us living with CRPS have been judged at one point or another, or have been told that our diagnosis isn’t real or to get over the pain. That’s the beauty about writing though. Your thoughts and opinions are your thoughts and opinions. Your experiences with CRPS are your experiences! They may differ from mine, Jane Doe, and John Smith’s experiences, but that’s the amazing thing about sharing your writing. We can all learn from each other. Within every story is something to learn and something to relate to. You never know who you could help by sharing a story about the time you went to Reiki or acupuncture, or to aqua therapy. Whether your experience was positive or negative, people can take that away from your piece. Here at RSDSA, we try to keep a supportive environment. Everyone is entitled to their own opinion, but we ask that people comment respectfully. Remember, no one can discredit your experience as a human being.
Once you get past your obstacles and start writing, reference your mind map to help you through the process. If you start to get stuck or frustrated, take a step back from it for a little while. Stressing yourself out about writing will not help your CRPS. But, as soon as something sparks in your brain, go back to your writing and get it all out. It may take you an hour, a day, a week, a month, or even longer. Writing is a process, and each process is different.
When you do finish your piece, consider submitting it to RSDSA for TheTuesdayBurn. We are always looking for writers to submit their experiences, opinions, and overall thoughts. You can submit your piece of writing to [email protected]. We like to try to have our blogs be over 400 words and to include a picture related to the topic. We want to hear from you!
This blog was originally featured on Gabe King’s blog site Treasures on the Sand. This blog was submitted to us by Mr. King with full permission to share his chronic pain journey.
For many of us with chronic pain, we can only remember suffering. It can be very hard to think of the times that were pain-free, living our lives like normal human beings. However, this is not the path Our Heavenly Father has in store for us, for He has a greater purpose at hand. Though this is the case, it can still be a difficult journey, walking through life with what the apostle Paul referred to as a “thorn in the flesh.”
I wanted to share with you my own journey, from its early beginnings to the present. I hope that you can find encouragement from it, no matter what stage of life you are in right now.
In October of 2013, while at a fencing practice, I popped my back during a routine exercise, causing my back to ache for at least a week. Eventually, the pain subsided, so we thought nothing of it.
From November to December, while in the midst of performing as “Scrooge” in A Christmas Carol at our local community theatre, I contracted two respiratory viruses back-to-back, causing immense pain in my chest. I went to our family physician, who, after finding nothing on my chest x-ray, diagnosed it as costochondritis, gave me an inhaler and Z-pac, and sent me on my way. The chest pain continued, along with fatigue from constantly being in pain.
January of 2014, the pain decreased and I began to feel better. This was not to last,
however, and by February my pain was back with a vengeance. We returned to our family physician. This time, he ran blood tests and gave me 1000mg of Naproxen to take once a day. Finding nothing on the tests and having no relief from the pain, I was once again diagnosed with costochondritis and told to go to the ER if it did not improve. In March, as the pain intensified, we went to an ER and had a chest x-ray and blood work done. Both came back clear…again, and we were back to square one.
April added a new layer to the mystery as my eye became inflamed for several weeks. We tried treating with redness eye drops, Neosporin drops, and allergy medicine. Nothing touched it. We got in with a pediatric ophthalmologist. She believed there was a connection between the chest pain and the eye inflammation, gave us prednisone drops and pills to see if they helped, ordered full blood work to be done, and referred us to a pediatric rheumatologist. The blood work, of course, came back normal, so we waited for our appointment with the rheumatologist.
In May, while waiting to get in with the pediatric rheumatologist, we went to a regular rheumatologist at UVA who believed that it was not a rheumatoid issue, but a muscular one, and decided to give me twenty cortisone shots in my chest wall. Needless to say, it was not a pleasant process, nor did it have its intended effect of relieving my pain. In fact, not long after, the pain began to spread from my chest to both my legs and arms, making it harder to participate in daily activities.
A few weeks later, we had our appointment with the rheumatologist. This is where I was first diagnosed with RND, Reflex Neurovascular Dystrophy. (RSDSA Note: RND and AMPS are used as names for pediatric CRPS). After running another batch of tests to prove his diagnosis, he gave us information on a Children’s Hospital in Pittsburgh that specialized in treating RND and sent us on our merry way. We never heard from him again nor were we able to get in touch with him.
We researched Pittsburgh and found they treated RND with intense physical therapy, along with psychological therapy. It sounded promising, but as we began the process to get scheduled with them, we looked deeper to find that they had a rather large percentage of patients who, within a year or two, had a recurrence of the RND. Though the possibility of being free of pain for a short time was great to hear, the fact that it would be short-lived struck me like a dagger in the back. I wanted to be completely cured, not halfway cured.
So, during most of the Summer of 2014, we sought out other means, from aqua therapy to a tens unit, all to no avail. We even went to a pediatric neurologist, who turned me away because he “couldn’t help,” pretty much saying it was all in my head.
Finally, in the middle of June, I gave it all to my Father, and He gave me a reprieve and allowed me a full month and a half without pain. Though I may not have known why He decided to grant me this gift, I understand now that it wasn’t a gift, but a message; a message that would take me two more years to figure out.
That fall, the pain reared its ugly head again, radiating out from my chest to my back, arms, legs, and hip. At this point, I was working part-time at a restaurant in town. I had to quit that job due to the physical limitations from my intense pain making me unable to continue.
Over the course of 2015, I had to limit most of what I loved to do, acting, fencing, singing, and other extra-curricular activities, because the pain was becoming unbearable to the point I was having a hard time getting out of bed. We tried everything from Lyrica to Maxalt. The only medication we found that helped was Cymbalta, which mainly allowed me to sleep through the night without waking up in excruciating pain. When the pain would get severe, I would take a Hydrocodone, which only knocked me out, but it allowed me to rest for a short time.
It was at the beginning of 2016 that it began to up the ante, from the death of my grandfather to living through an EF-3 tornado to our eventual move to North Carolina in the fall. The stress of all those combined caused my pain syndrome to spin out of control. I was taking classes online at the community college nearby and had the hardest time passing with good grades because I could hardly focus with all the pain.
When we had officially settled in NC, we set up an appointment with a nearby neurologist, who was highly recommended by members of our church for persevering to find answers. He diagnosed me with AMPS (Amplified Musculoskeletal Pain Syndrome, for more info, click here) and, after poking and prodding me, decided there was nothing he could do and left me to fend for myself.
This was the final straw for me. I had finally had enough with doctors and medications, and finally came to grips with the fact that my Heavenly Father has allowed me to bear this burden for a greater purpose. And so, that brings us to the present, where I currently am endeavoring to go through life with this “thorn in the flesh.” Yes, I may have my bad days, but I still strive to fight this vicious disease and glorify my Father through the path He has in store for me.
This Disabiliday blog was originally featured on Pain Matter‘s website. It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD.
“You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post:
(There are additional References and Links at the end of this blog post.)
This week, Paula sent me a beautiful letter to share with all of you (see below). Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain. I feel delighted and honoured that Paula decided to share her inspiring letter and beautiful photos with my Pain Matters Blog (as well as any other media that Paula chooses). Upon reading Paula’s letter, I thought to myself, “Paula’s idea to start a ‘Disabiliday‘ tradition for patients whose lives are challenged by disability and pain is fabulous! In fact, any day, whether it is April 1 or otherwise, is a great day to celebrate people who face adversities and obstacles due to disability including pain, and to also be grateful for our own blessings.”
Quoting from Paula’s her own words written to all of you from the bottom of her beautiful, caring and generous heart:
“This past Saturday, April 1, 2017, I held the world’s newest disability holiday – Disabiliday. I just entirely made up a holiday. I figure someone has to have started every other celebration, so why can’t I do the same? Last year, I had my 15th anniversary of having Complex Regional Pain Syndrome, a severe chronic pain disease. With such a large milestone, I knew I could either get very depressed, or make something positive out of it. It wasn’t something I could just ignore. Instead, I chose to make a celebration out of it. I hadn’t just been in pain for 15 years – I was in pain for 15 years and was still going. It became my Disabiliday.
The event turned out to be so positive and wonderful that I decided to hold a second one this year. I ended up making more progress this past year than I ever had, in terms of function and ability. I wanted to celebrate that as much as anything – that I’ve been in pain for 16 years and am now going somewhere. I don’t really know where yet, but I figure I have another year to figure that out.
I think Disabiliday could also be relevant to other people with disabilities. When you’re disabled, you can often feel isolated, or like you’re not having the same kind of lifetime milestones other people have. Maybe you can’t move out and have a housewarming, or maybe you can’t have a long term relationship with engagement and marriage and babies. Of course, plenty of people with disabilities do just those things and I’d never discount them or their lives – but I, at least where I am right now, don’t feel like I’m able or ready for them. And even birthdays can feel like you aren’t where you should be in life, especially compared to people around you.
So I wanted to do something new and different. I wanted something that fit where I am in life, where I am emotionally. And thus, Disabiliday. A day to celebrate that despite the amount of pain I’m in, despite the limitations my disease has enforced, I still am. I still have worth. I still have a presence in people’s lives. I still am going. Surrounding myself with the support structure I’ve been so lucky and honoured to have found in my life, I was able to sit back and take in just how many people love and care about me. Without them, I would never have gotten through so many years of pain. They’ve made the time worth it.
Disabiliday is a way of reinforcing my place in life. The place in my life, and in my family and friends’ lives. Emotionally and psychologically, all of the normally invisible ways people care were made evident. It might seem silly to just make up a holiday out of nothing but a terrible pun my friend came up with to have a Disabilitea Party that I later expanded because if I’m going to make up a celebration I might as well get a full day out of it, but the meaning really is there. And it was a lot of fun too. I got my hair and makeup done at Sephora and Mario’s Salon (now Aura Polo Park) respectively last year and felt amazing once I was all made up. This year I got my hair highlighted, trimmed, and makeup all done at Aura Garden City. It’s superficial to some extent, but I felt so much better once finished. It’s an external thing, of course, but that doesn’t mean it doesn’t matter.
Last year we went to Sam Po Dim Sum and also introduced all of my non-Jewish Winnipegger friends to the deliciousness that is a shmoo torte from Gunn’s Bakery. It’s this layered angel food and whipped cream confirmation that’s North End of Winnipeg Jewish tradition.This year I upped my game with a wonderful dinner at Kildonan Park’s Prairie’s Edge restaurant and a cane cake from Dolce Bake Shop. I’ve used two canes for quite a few years now (when I wasn’t in a wheelchair), and I’m finally, finally starting to walk on my own. In fact, I made a great entrance to my party by walking in. That alone made the night amazing.
Photo Credit: Dario Schor
But I wanted to step it up. I went to this awesome bakery (I recommend the chocolate cupcakes with pistachio buttercream icing) and had the pastry chef make a custom cake for me- a replica of one of my canes. And man, did slicing that thing up feel good!
Photo Credit: Dario Schor
Other highlights of this year’s Disabiliday party included a featured guest, my physiotherapist Maria Pawlyshyn of Movement360 Inc. She is a huge part of why I’ve made so much progress this past year. Working with her, I’m doing better than I ever have since developing Complex Regional Pain Syndrome. Other features included a dinosaur balloon- a DisabliT-rex of course (I hate myself for these puns just as much as you do) – and a truly stunning purse my mom and I designed and she made for the event (see top photo). We’ve made a lot of purses over the years, but this one has to be one of the best. Just really gorgeous. The writing on the front of it is my handwriting.
Photo Credit: Dr George Fulford
We also filmed the Disabiliday parties for a documentary Dr. George Fulford of the University of Winnipeg and I have been filming for a few years now, with the assistance of Steven Mellor for sound. Originally meant to be the first of a series of five minute videos of young adults with disabilities, this project has ended up capturing the huge amount of progress I’ve made over the past couple years. I was at my worst, nearly entirely wheelchair bound, when we started this project and I’ve made such huge gains. To actually walk on my own – I never expected ever to do that again in my life.
In other bragging about things news, my wonderful friends got me the most amazing sets of rings for a Disabiliday present. This isn’t quite as materialistic as you might think. For many years now, I’ve developed open sores and wounds all over my body. My doctors think that with the amount of pain I’m in, always, the skin has just sort of gotten very weak and opens up into wounds. I don’t do anything to create them, I’d like to explain – they just open up without any influence or action on my part. They eventually close up but leave scars. Even though the scars eventually start to fade, it doesn’t help because more new wounds have already opened up. To detract attention from all of my wounds, I wear lots of rings (and wear makeup) to both cover up wounds on my fingers and to attract attention away from wounds on the rest of me. My friends know this, and so rings really do mean a lot to me. Plus they are adorable and I totally love them too.
So Disabiliday does really have some meaning. One one level, I realize how weird – and how self-important – it is to make up your own holiday and expect people to celebrate it. On another hand, this matters to me, and my friends honestly do support it. If it makes me feel better, if it doesn’t harm anyone else…why not? Maybe a lot of people – if they were to ever even hear about it – will think me stuck up or even that I’m celebrating being a victim of my disease, but I can’t help that. All I can do is lay out my reasoning here and hope maybe other people might understand. That’s really all anyone can ever do, really.
Finally, I want to thank Prairie’s Edge for hosting us, Dolche Bake Shop for a delicious cane, and Aura Garden City for totally making me over. And I really want to thank my best friend, Eryn Schor, for not only organizing both of my Disabiliday events, but actually sticking around for the better part of five hours as I got all made up. Now there is a truly loyal friend! She means so much to me and has been by my side since we met in elementary school. Without her, these events would never have happened. Thanks also go to Dr. George Fulford for filming the whole event – and for filming my life over the past few years, and to Steven Mellor on sound. Dealing with that boom mike was not easy!
And lastly, thanks to my parents. My dad was unable to be in town for the event, so we just got him on Skype on a phone to take some family photos. With my parents, all of my friends, and my health care providers, with all of their love, care, support, understanding, work, and through their thought, research, and education, I can truly say that despite the amount of pain I’m in, the past 16 years have been entirely worth it.
Happy Disabiliday!”
Photo Credit: Dario Schor
I am certain that most of you will be equally touched by Paula Orecklin’s letter just as I am!
Sabina Walker, Pain Matters Blogger
PS Are there any thoughts on Paula’s idea of a ‘Disabiliday‘ tradition from the rest of you in ‘Pain Matters Blog Reader-Land?’
FURTHER REFERENCES AND LINKS ON PAULA ORECKLIN, CRPS PATIENT:
This blog was originally titled “How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States.” It was initially posted on Connectivity.
At RSDSA’s Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below:
“Here’s how one organization (for whom policymaking is currently on fire in the states) moved from managing a handful of pieces of legislation at state level four years ago, to keeping on top of 1,400 different bills and 500 regulations, in all 50 states, D.C. and Puerto Rico. Without missing anything of importance.
And it’s all done by ONE policy director.
Katie Duensing is the assistant director for legislative and regulatory affairs at the Academy of Integrative Pain Management. Like many busy policy directors, a huge part of her job is juggling federal and state tracking for which she has CQ’s StateTrack to see what’s going on with her issue. But four years ago pain management, and patient access to it, wasn’t yet treated as a legislative and regulatory issue of top priority in the states. Then came awareness of the opioid crisis. Suddenly states all across the country were being confronted with huge spikes in prescription pain medication addictions and overdoses. Lawmakers needed to legislate fast regarding the prescribing and dispensing of opioid analgesic medications. But that led to a lot of knee jerk policy being written.
Enter the State Pain Policy Advocacy Network (SPPAN), set up just five short years ago as the policy department of the Academy of Integrative Pain Management, to tackle the policy barriers relating to optimal pain management.
The Academy of Integrative Pain Management has nearly 4,000 members that represent the various members of a “pain care team” necessary to provide effective integrative or multidisciplinary care. Half their members are physicians, but other disciplines include nurses, behavioral health specialists, physical therapists, pharmacists, acupuncturists, physician assistants, chiropractors, massage therapists, and more.
The Recent Shift in Action
‘I’ve been doing this for four years, and the first year it was just a handful of states dealing with pain management regulations and opioid prescribing,’ says Duensing. ‘Now it’s really every state on some level. It’s a constant deluge. There used to be a break in the summer, when the legislatures were out of session, but now that’s when the regulations start coming fast and furious, and the pain management rules are written.’
The Dilemma
The sheer numbers Duensing has to stay on top of are staggering: ‘I track all legislation and regulation related to pain management in all 50 states and in D.C., as well as federally. It’s intense to say the least. We don’t work on all of them in-depth, but we still track each one, and I go through them all to decide if it’s relevant or not. If it is, I categorize it in case we need to look it up quickly. We track by issue and by jurisdiction, and there are 13 different issue trackers we’re watching with StateTrack.’
How SPPAN Has Translated That Tracking Into Big Wins
In Florida last year the Board of Pharmacy was looking at redoing their dispensing guidelines for controlled substances in response to a big patient access issue. A couple of years previously, there had been a significant push in the state to shut down what are referred to as “pill mills”, the so-called clinics where patients could get prescriptions for large numbers of opioid analgesics without getting a proper evaluation. While the clinics were forcefully shuttered in Florida, the unintended consequence was that the scales tipped too far in the other direction, says Duensing. ‘Even patients that were getting legitimate prescriptions from legitimate practitioners, couldn’t get them filled. Pharmacists were so terrified of the backlash from all of the rules, and from the fear of the DEA looking at them very carefully, that they essentially said, ‘we’re not going to fill these prescriptions.’ So all these patients couldn’t get their medications. Even the media reported on it, which was a testament to the efforts of a coalition of patients and providers in the state highlighting these terrible disparities.’ Duensing picked up on the Florida prescribing-issue using StateTrack, and used it to get updates as the rules were amended. ‘The rules were published in proposed form three different times, so it was quite the process. But we were able to keep up to date, keep tracking the changes, keep putting in our comments and pulling together the necessary stakeholders,’ she says.
‘We wrote numerous letters to the Board of Pharmacy and had suggestions on how they could deal with the issue. But we also attended hearings and convened many interested stakeholders to really discuss the issues. We spoke with the DEA at length, the Florida Attorney General’s office, and really tried to work the issue from within. Florida can be a difficult state to crack if you’re not on the ground.’
The Result
For SPPAN and their stakeholders, their constant tracking and commenting meant the resolution was a clear win as they effectively ended up completely rewriting the Board of Pharmacy rules. ‘The new rules really enabled pharmacists to practice the way they wanted and should be practicing, to give patients their medications. That was a really huge win in Florida, with a lot of stakeholders who worked closely together. Luckily everyone saw that there was a problem and that doesn’t always happen,’ says Duensing. The icing on the cake came when Florida’s attorney general, known to be tough on crime, and who had been behind the push to get the pill mills shut down, came out and said the pendulum had swung too far in the opposite direction, and the issue of patient access needed to be addressed.
Spotting The Trend In Delaware
Thanks to those almost 2,000 pieces of legislation and regulations Duensing is keeping an eye on, she was also able to spot bothersome regulations in Delaware. In August 2015, the Delaware Control Substance Advisory Committee released the first draft of their rules related to safe prescribing of opioid analgesics. Duensing saw that bubble up from her StateTrack alerts. ‘The first draft was worrisome for us, and we submitted seven pages of comments in response, proposing alternate language and explaining why some language might not be correct,’ she says. While the final proposed regulation is expected any day now, SPPAN can mark things down as another solid win. ‘They ended up adopting a good amount of what we suggested verbatim, which was really very exciting,’ says Duensing. ‘I found this originally using StateTrack, tracked it all the way along, and have been alerted to each new proposed version. StateTrack has been very reliable through the whole proposed regulation, and we’re anxiously awaiting the final version any day now!’
How Having a Tool Makes Life Easier
Having a tool that tracks diligently state by state, means Duensing and her small team can stay on top of the multiple pieces of legislation that have spiraled relating to pain management throughout the states. ‘Because we’re a national organization, and the fact our field covers legislation and regulations that are both federally and state controlled, it would be almost impossible to do this without a tracking tool like CQ StateTrack. I certainly wouldn’t get the coverage or depth needed. Or the timeliness.’
Legislative Tracking – The Quiet Man On The Team
‘We used to be a three-person department, but the director of policy and advocacy became the executive director of the organization, so we like to call ourselves a two and one third department now,’ says Duensing. ‘I know some people that track manually, but they usually only target a few states, or for a very narrow issue. When I tell people how much I’m tracking, they’re blown away. The sheer amount is ridiculous.’ ‘I still track a lot more than what our top priorities are, because we do deal with other issues,’ Duensing says. ‘If I see a hearing has been scheduled for a bill having to do with pain rules, or a piece of legislation having to do with a prescription monitoring program, I’ll do a deeper analysis to see if it’s something we need to support or oppose. If so, I start writing letters.’
Advocacy With A Twist
Those letters sometimes take the form of giving the perspective of pain physicians, and show unintended consequences for patients, and how they might be resolved. ‘Other times we’ll reach out to our stakeholders and try to do sign-on letters. If you can get 70 organizations to sign onto a letter, you’re going to get much further. The way we depend on action getting done is by finding and disseminating legislative and regulatory updates to the SPPAN network organizations, and reaching the leaders of these organizations.’ SPPAN has a long list of network organizations, such as the Center for Lawful Access and Abuse Deterrence, the American Medical Association and American Cancer Society – bodies concerned, but not necessarily directly involved with pain management. ‘We try to be both a warehouse and a distributor of pain policy information, keeping stakeholders up to date on the most important issues that need action,’ she says. ‘In my opinion the most important aspect of my job is the letters I send out to policy makers because for us that’s where the rubber meets the road, and how they hear from us. A hugely important part of my and my colleagues’ jobs, jointly, is outreach to other organizations, because that’s also how things get done, too.’ While Duensing’s organization has been at the eye of a hurricane of policymaking for the past few years, it’s not showing any signs of letting up. ‘When I first started, our field was such a kind of niche one off to the side. No one really talked about it and getting any media attention was next to impossible. But in just a few short years, policies related to pain care have quadrupled! It’s a really intense time. I can’t even imagine not having a tool like StateTrack. It’s really vital to what I do.'”
CRPS/RSD warriors, be sure to find SPPAN online and follow their efforts. See how you can help make a difference for people living with chronic pain syndromes, such as CRPS/RSD. It is important to get involved!
How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily’s story and then see how being mindful helped her.
Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD). I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk. I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color. So, at first, I was relieved that I finally had an explanation for what was happening to me. But then the podiatrist looked at me with deep concern and told me this condition can result in lasting, debilitating pain. “This is beyond my realm of expertise,” he told me. “You’ll need to find a specialist who can hopefully help you re-gain use of that foot.” Hopefully, I thought, was not a word I like to hear from a doctor. He wrote down the acronym RSD on a sheet a paper, and told me to go research the condition.
Following the doctor’s instructions, I went home and immediately Googled RSD. As I read about the horrors of this neuro-inflammatory disorder, I naturally became overcome with fear and anxiety. I wondered whether I’d ever be able to walk again, or whether this condition would spread through my body like so many others with this nightmare of a disorder. And as my fear and anxiety levels crept higher and higher, I noticed something—the swelling in my foot got more and more severe. This was a very important observation, as I noted a direct connection between my emotional state and my level of inflammation.
A couple months later, I saw a pain specialist who was able to successfully treat my RSD. She was the first person to confirm what I had observed on my own—that high emotions cause an increase in neuro-inflammation. Of course, the flip side of that is maintaining a calm emotional state can help lessen the severity of the inflammation and pain. She was quick to remind me that being fearful and anxious did not cause me to get this disorder in the first place. There is still a lot unknown about RSD, including why it occurs, but for me it is related to an autoimmune process already very present in my body. I also have lupus, and my pain doctor believes that RSD may be a manifestation of systemic lupus in my nervous system. So, while we can’t blame the disease entirely on emotions, we do need to acknowledge that emotions can have a profound impact on the disorder.
As I began a series of sympathetic nerve blocks to treat my RSD, I also began seeing a pain psychologist. He was able to explain to me the connection between stress, pain, and inflammation. When we are stressed, we tend to tense up our muscles, thus constricting blood flow and increasing pain. When we are calm, we let our muscles relax, and our pain is lessened by increased circulation. He taught me how the more I became anxious, stressed, and worried about my condition, the severity of the pain would increase. “Don’t worry about the pain,” he told me. But of course, this was much easier said than done. We all know that someone demanding us not to worry does not help mitigate our worries in the least bit. I needed more instruction on how not to worry.
To help decrease my stress and anxiety about living with RSD, the pain psychologist began a series of sessions with me on mindfulness training and biofeedback. The first exercise we did was a deep breathing technique. The breathing exercise is simple: inhale slowly through your nose, filling not only your lungs but also your stomach with air, and then exhale slowly through your mouth. Your exhale should ideally be much longer than your inhale. My pain psychologist had me to do 15 of these breaths at once, with my eyes closed. He instructed me to start doing these 15 breaths at set times during the day. So, I set an alarm on my phone at five times throughout the day as a reminder. Once I began incorporating these meditations into my daily life, I definitely noticed I was becoming more calm and centered. Even if I was in the middle of doing something, when that alarm went off on my phone, I stopped what I was doing to just focus on breathing.
Now, to be clear and honest, my RSD symptoms did not disappear when I started meditating consistently. But, I was able to cope with the symptoms better, and I was able to better control my emotional reactions to the pain I was experiencing. As my doctor noted, relaxation is incompatible with feelings of anxiety, frustration, tension, and pain. When I was having a particularly painful day, I would just breathe. The breathing exercises gave me a distraction from pain. After all, allowing yourself to focus only on the pain is a dangerous path to go down. By directing your attention to breathing, you’re directing your attention away from the pain.
My pain psychologist even showed me how meditation was having a physiological impact on my body. He connected my hands to thermometers, which were connected to a computer. As I breathed deeply and consciously relaxed my body, I could see on the computer that the temperature of my hands increased—a sign that my body was more relaxed with increased circulation. When the doctor asked me to speak about stressful topics or solve difficult math problems, I could see the temperature of my hands falling on the computer—a sign that my body was stressed and tense, with more constricted circulation. This technique is called biofeedback, and has helped me learn to control the blood flow to my hands and feet. As someone who also has Raynauds Phenomenon (a circulation disorder that causes blood vessels to narrow), this has been particularly useful!
Another important mindfulness tool that the pain psychologist taught me was about the impact of positive self-talk. Self-talk (or they way in which we speak to ourselves) can have a big impact on pain levels. For example, negative self-talk would include phrases such as:
“I can’t believe this is happening to me.”
“I’ll never be able to enjoy anything if I can’t walk.”
“I can’t take this anymore!”
“No one will ever understand the pain that I’m in.”
Negative self-talk results in a self-defeated mind, which translates into pain signals being interpreted as suffering and misery. Now, if we change some of that negative self-talk into positive self-talk, it might sound more like this:
“It’s unfortunate that I can’t walk today, but there are many other things I can still do and enjoy.”
“I’ve had days this painful, and I have always gotten through them. I can get through this one.”
“I can distract myself from the pain by meditating, watching a movie, or reading a book.”
Mindfulness training teaches us to be conscious of our own self-talk. By training yourself to be more understanding of your own illness, you can bring in more positive self-talk and decrease your level of overall discomfort.
There is certainly a lot about this disorder that is out of our control. But it’s comforting to know that we have the power to control how we respond and react to the pain of RSD. Pain doesn’t necessarily have to result in suffering. Learning mindfulness and meditation techniques was and continues to be a very important part of my RSD treatment plan. My RSD has improved a great deal, but it is still very much present in my life. When the next flare comes, I know that I have many mindfulness resources and tools to use to help me cope with pain and stress effectively.
Getting closer to the wedding date, Samantha updates everyone on some of the tips she has learned through the wedding planning process with CRPS. What questions do you have for Samantha? She can answer them in the next edition!
Hello friends! It’s been a while since I’ve update you on the wedding chronicles. We are just about 3 months out from the big day (I know, crazy, right)? But I’m getting extremely excited, although a tad overwhelmed.
Recently, my health hasn’t been the best it could be. My CRPS has gone into occasional flares, but the EDS and POTS have been what is really affecting me. But the EDS contributes to CRPS pain for me and then the POTS just makes it so I’m down for the count. I’m really glad I started planning actively so early in the process. I’ve had quite a few days when I had intended to do so much, but was able to do so little. It is a gentle reminder that we have to pace ourselves and roll with the punches. Some days will be bad. That’s when you have to listen to your body.
Since the last time I blogged, we’ve had a lot go on. Our best man dropped out of the wedding, but was replaced with a best woman. Our amazing photographer also did a super fun engagement picture session for us. We’ve had suits and dresses ordered, started on the floral arrangements (which I’ll get to below), almost completely finished our centerpieces, received our invitations, and we’ve been getting all of the other décor items and accessories in stages. It’s all really coming together!
Our engagement photography session was fantastic. I found an amazing photographer whom is all about making sure I’m not straining myself. Plus, she lets you do whatever you feel is natural, so most of our pictures are just how my fiance and I are as a whole. It was so much fun. She even found a location that looked like it was right out of Beauty and the Beast (which is my wedding theme after all). We did a lot of pictures sitting down so I could rest, since I had been flaring around that time and had just recovered from a dislocated hip. It was incredible to have someone that was so willing to work with my limitations. She’s now on the top of my recommendation list for everything. This whole day was just really special and so much fun. I can’t wait to see what she does for the wedding. She even came up with a plan for if I get a pain surge the day of the wedding! Woohoo!
The floral arrangements are really a fun element. My maid of honor is the one that is actually doing my flower arrangements. Because of my dye allergy and the sensitivity of my hands, we decided to go with fake flowers. I was extremely hesitant about this decision, as fake flowers can look, well, fake! But Michael’s Craft Store has some extremely realistic flowers that even the petals feels real (but the stems don’t). They are coming out beautifully. Even better, now I don’t have to try to preserve fresh flowers as a memento. Since my main flower is a rose, now I don’t have to worry about de-thorning either. It’s a win all around. I can’t wait to share these floral arrangements with you.
So, what is my current source of stress due to CRPS? Thinking about trying to write out all the invitation envelopes and finishing the centerpieces. While my hands aren’t too bad, my back and arms start to burn if I lean forward for too long (i.e. to write out anything with a pen and paper). My mom and my maid of honor have volunteered to help me with this so I don’t have to do too many, but it is frustrating. There are so many envelopes to fill out, but I’m working on accepting help. It’s the only way it’ll get done without sending me into a full flare after all. For my centerpieces, I have to paint some stands and get some appliques printed out with the Cricut. I know my grandfather will be the one doing the Cricut, but it’s the application that stresses me. Much like the writing, any kind of leaning forward for extended periods of time, or extending my arm out for extended periods of time, sends me into terrible flares (and I tend to dislocate because of all of the extending). I think my fiancé will have to put the appliques on our teapots. I can at least spray paint the stands. Other than that, I just need to arrange some flowers for inside of the teapots and I’ll be good to go!
We did some cake testing about a month ago. My fiancé hates cake so he’s a fun one to bring. Granted, I’m just as fun with all of my restrictions (no red dye, gluten intolerant, lactose intolerant, etc.). We had wanted to bring my grandmother to our cake testing, but unfortunately, she was too sick to come, which was a blessing in disguise since her wheelchair wouldn’t have fit. I’m lucky that I was using my cane and not my wheelchair, because there is no way I would have been able to fit in to the testing area with my own wheelchair. What a reminder that you must check EVERYWHERE. Even if they say they are handicap accessible, some places do the bare minimum. I realized in college how many places do the bare minimum. I almost started something I wanted to call Sammie’s Challenge, where business owners or higher ups have to navigate their entire place of business in a wheelchair without assistance. I always thought that would open their minds and eyes a little more. I think I saw that someone recently started something like this. I hope they go far with this. But, I digress.
I’m currently working on customizing a cane for the big day. I feel as though the zebra print may take away from some of the classier details. Let me know if you think I should do a cane customization tutorial or share links to where I found a cane that fit!
I recently booked my honeymoon trip as well. How on earth I’m going to get through the full wedding, then flying, and then a ton of walking at theme parks is beyond me. You know how when you really want something, you pull the strength from deep inside of you and pay the price later? I have a strong feeling that’s what’s going to happen. But I’m strategizing. I’m going to start with the theme park that has the most walking. I’m also making dining reservations so there are designated times when I have to sit and rest. My fiancé is one of the best people I could take a trip with in terms of resting. He makes sure that I don’t overdo it when we just go out to do errands. I imagine this is going to be interesting.
So, now that we’re a little closer to the end of this process, let me give you some more tips. Whether you’re the bride, groom, maid of honor/best man, or parent of the bride/groom, you can make these tips your own.
Start planning and buying things as soon as you can. This will save you time and energy as the big day gets closer. It’ll also seem like less of a financial hit since you’ll be doing everything in stages.
Take breaks. If your health is doing poorly, focus on getting yourself better. Nothing is worth overdoing it, especially because it could take away from your special day.
Make a realistic budget. Remember, a budget is an estimate. Don’t go over what you can handle. The day is about you and your soon to be husband or wife, not about how many flowers you had, how extravagant things were, or anything else. Do what feels best for YOU!
Make changes based on how/where your CRPS affects you. Have it in your feet? Ladies, avoid the heals and opts for cute flats or sneakers (or whatever you can tolerate). Make time to sit (even if you have to schedule it), and online shop as much as possible. Have it in your hands? If you can’t grasp flowers, consider a pinned corsage on your dress. Can’t wear a ring? Find a necklace that you can put a ring on or a necklace that will symbolize your marriage.
Call everywhere to see if they are handicap accessible, especially in the areas that you will need to access. You don’t want any unpleasant surprises.
Accept help! Have an envelope writing party and have snacks or food for everyone that helps out. Don’t be afraid to ask for help either. The worst they can say is no! This applies to every part of your wedding.
Find vendors that will work with you and that will accommodate your needs. You are paying them for their services, don’t settle!
Find bridesmaid dresses and suits with plenty of time to spare. Everyone has at least one flaky bridesmaid/groomsman that will wait until the last second to get what they need to get.
If you’re going on a honeymoon, try to find somewhere that you think your body can handle the best. Can’t handle the feeling of sand on a beach? Don’t do a beach resort. Can’t have anyone bump you? Don’t pick a popular tourist destination during tourist season.
This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty.
When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count.
When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got excited about making toga costumes with hospital sheets and having photo shoots with the other girls in the clinic. My main priority, aside from going home, was befriending the nurses so they would steal pillow cases for us to tie dye or extra ice cream cups at lunch.
Every so often I reminisce with a few close friends, who I met in the hospital, about out “those days.” Many of us are in remission or have found ways to cope with our illnesses outside of frequent appointments and emergencies. Others are still struggling, but have an amazing network of family, friends, and doctors who are there to support them every moment of their journey.
There’s something special and unifying about being a “hospital kid.” There’s something comforting about knowing that other people “get it.” There’s a relief that comes with not having to explain yourself. There’s a sensation of belonging that is revitalized every time I text, “I just smelled Purell” and get a response that reads, “OMG yesss” or “I know what you mean.”
When I was talking with my friends, I realized we all had fond memories of our nurses knowing our favorite shows, what we were studying in school, or which activities we were excited to go back to! We all had jokes about which arms or veins were best for blood draws and IV’s. We were all confident we could navigate the hospital so well, perhaps better than our own towns, that we could give directions to other people even to this day; most importantly we knew approximately five ways to get to the cafeteria!
So, when I asked my friends to respond to the phrase, “You know you’re a hospital kid when…” here’s what they said:
You know you’re a hospital kid when…
1. Your biggest allies are the nurses.
2. You almost always anticipate that your plans will fall through because of an unexpected trip to the ER (or an appointment you forgot about).
3. Random things like the smell of Purell, concrete staircases, or writing your order with a golf pencil at restaurants remind you of the hospital.
4. Your best friends are people you met in the hospital, and over a decade later you still keep in touch.
5. You laugh whenever someone asks you to rate your pain on a scale of one to 10.
6. You’ve perfected realizing when someone isn’t really “fine” because you too perfected looking “fine” when you’re not.
7. Even though it’s a bit twisted, you get excited if you learn someone has the same condition as you.
8. Getting blood drawn or an IV is “no biggie.”
9. You watch “Grey’s Anatomy” and scream at the TV because that would never happen in real life!
10. Your hospital stories are so intense or dramatic that most people don’t believe you or think you’re exaggerating (e.g., “I relearned how to walk twice by doing PT/OT for eight hours a day for six weeks – twice! It was more difficult than the conditioning we do at gymnastics practice.”)
11. You can explain the spoon theory with more accuracy and detail than your actual homework!
If you ask most hospital kids, they’ll say their upbringing inside the walls of the hospital was definitely not traditional! They’ll probably tell you that they’d never wish chronic illness on anyone, but in hindsight they can’t imagine their lives without their stories of medical struggles and victories. Our illnesses don’t have to define us, but the definitely shape who we are and how we encounter the world.
Written by Guest Blogger Gabe King
Written by Guest Blogger Gabe King
By Guest Blogger Emily Salser Nunez
Written by Guest Blogger Melissa Lovitz